Tag Archives: oliver jones

When Oliver passed away we knew we wanted to do something to give back to those who’d helped us on our journey. In March, super Nanny, aka Paul’s mum, completed an abseil off Fort Dunlop building in Birmingham and raised over £2500 for ward 8 at Birmingham Children’s Hospital.

We decided we would fundraise for Ronald McDonald House in Birmingham as they’d provided us a second home, where we could be less than 5 minutes walk from Oliver and where we could stay as a family. It costs RMHC £25 to house a family each night, so in staying there almost 8 months it was the least we could do try and give back to this amazing place that never asks families for a penny.
£5000 was the target and we thought we’d never achieve it, but with donations from friends, family and work colleagues we made it! One of the kindest acts, was by Jen Darby who was a student nurse during Oliver’s stay on ward 8. Jen had grown fond of Oliver and to help decided to run the Nottingham half marathon to help raise funds. Jen’s not shy to admit she doesn’t enjoy running, but in doing so helped raise around £700.

So today, we returned to the house for the first time since emotionally packing up our car with everything we’d accumulated over an 8 month stay and headed home for the last time in March.

We officially opened Billesley room on the 2nd floor, where Ella proudly cut the ribbon. We were also presented with a keepsake plaque to take home.
Thanks to generous colleagues at Arqiva, we also donated lots of household goods to help the house such as dry food and cleaning products.

So next time you’re in McDonald’s and you see the collection boxes on the tills, that’s what they’re for…to help families stay close to their sick children in hospital…so please give generously.

If you’d like to donate to Ronald McDonald House Birmingham you can still do so via Oliver’s page here

Never did I think a week ago that I’d be writing this today. Last Saturday we managed to get Oliver out of his cot for a play before he resumed sleeping. But not anymore as after 21 months of fighting Oliver decided enough was enough.

Just a week ago

The last six months have been so hard seeing our beautiful boy become so poorly but bravely solider on.
We have always been realistic about Oliver and over the past six months in particular have had to face the reality of losing him more than once. Seeing Oliver’s eyesight deteriorate was one of the hardest things and we were increasingly concerned about his quality of life and what impact all the procedures were having on him.
Last week we met with Jane Hartley, Oliver’s consultant, and she told us that she wasn’t sure Oliver’s bowel was going to recover and we were all in agreement that Oliver had been through too much and we wouldn’t put him through any more major procedures. We also raised concerns about Oliver increasingly zoning out and struggling to focus and so Oliver had two scans on his brain.

On Monday afternoon we met with Patrick McKiernan who was consultant for the week and he sadly told us that the scans showed Oliver’s brain was slowing right down and that nothing more could be done. Within less than a week we had gone from knowing we’d lose Oliver at some point to we were going to lose Oliver imminently.

We had spent the best part of 16 months at Birmingham Children’s Hospital and Oliver always managed to win the hearts of everyone he met and this week has shown what a loved little boy he was. On Tuesday and Wednesday Oliver had a steady stream of visitors all day with everyone telling their stories of Oliver and how cheeky he was, especially at night when he’d want to play, and of course his little chuckle.

People are so quick to criticise the NHS but we cannot fault them for all they have done for Oliver. This week has shown how amazing both the NHS and the people that make it are. The Palliative Care Team quickly got involved and they and the Pain Team ensured Oliver had the best possible care and that he was as comfortable as possible. The staff of Ward 8 have been absolutely incredible, providing as much tea as we could drink and the best support. It’s easy to think nurses become immune to seeing children so poorly and not make it, but seeing the nurses so upset will always be something we remember as we realised how much a part of Ward 8 Oliver had become.

On Wednesday the nurses arranged to have a full size bed put into Oliver’s room instead of his cot and this meant we could both lie with him and cuddle him until he left us in the early hours of Thursday morning.

On Thursday we visited Oliver where he looked so angelic in the new babygro we’d left out for him, tucked up with Gruffalo. We then said our final goodbyes on the ward before packing up and heading home for the final time.

Today was a bittersweet day as Oliver’s Nanny completed her 100ft abseil down Fort Dunlop to raise money for Ward 8. Oliver passing away made her even more determined and we are incredibly proud of her! If you would like to donate please visit https://www.justgiving.com/veronicasoar/

We’re not quite sure what we did before Oliver or what we do now but I know we’ll get through it as I have the best husband, daughter and in laws who came every week. I’d like to say that we had the support of our friends and that we had lots of visitors, but that wasn’t the case and this whole experience has shown who our true friends are. However it has shown how strong we are and what an awesome threesome we are.

The good news is I’m finally home! Well I say home but I’m still in hospital alot! Last week I spent 4 days in hospital so I’m spending lots of time on the motorway which means lots of sleeping for me…not that I need am excuse to sleep!

Playing with my sister

My eyes are still really sore and both my corneas are very scratched so I’m having 4 types of eye drops and ointments. In the daytime my mean Mummy and Daddy have to prise my eyes open every 2 hours to put drops in but they do tell me it’s to help me.

My sore eyes mean I’m still very grumpy alot of the time. My favourite position is having cuddles so I can hide from the light. Because my eyes are so sore I want to sleep lots but Mummy and Daddy are trying to keep me awake so I sleep properly at night.

I’m back in Rotherham two days a week for my ECP and Dr Taylor and Dr Alfred are pleased to see how well my skin looks as they’d seen the nasty photos from Birmingham from when I was really poorly.

Enjoying a cuddle up in Rotherham with Daddy

Mummy and Daddy took me to a special corneal clinic last week last week and the specialists had a couple of ideas of how to help my eyes so we’re just waiting to see what the plan is.

The main thing now is just staying free from infection as my immune system is still very very weak and I don’t want to be back in hospital again!

The good news is that my skin is healing up well after my last flare up. I just had one dose of campath and luckily that seemed to be enough to fight off those nasty donor cells! My eyes are much the same and the opthalmologists are checking my eyes regularly.

Me a week ago

On Friday Rachael from Rotherham came to see me and I got the first ever ECP treatment at Birmingham Children’s! Rachael got a bit of a shock seeing me on a ventilator but I gave her finger a squeeze to let her know I knew she was there! Today Maggie has come down to give me ECP and then I’ll be having more on Friday too!
I’ve also had another dose of stem cells as these help when there’s inflammation and yesterday I came back from theatre with even less dressings!

The doctors have been a little bit worried about my chest but thankfully I haven’t developed any infections. Hopefully I won’t need too many more trips to theatre to have my dressings changed and then I can get off the silly ventilator. Mummy and Daddy haven’t been able to give me cuddles for over 2 weeks now so I’m looking forward to being well enough to come out for a cuddle!

In other news Oleg got GVHD too but Ella the nurse has bandaged him up like me!

Oliver’s asked me to do this week’s blog as he’s feeling a bit poorly.

After last week’s visit to Rotherham for ECP Oliver seemed to be doing well and we managed to wean his oxygen down last weekend. We even managed to enjoy a few cuddles and Oliver was able to sit up and play for short spells.

Enjoying a nice cuddle

During Sunday Oliver’s skin got progressively redder as the day went on and he spiked a temperature. Overnight his skin blistered on his face and neck with new rash appearing on his leg and we knew his GVHD was back.

Oliver being cheeky and trying to get his sats probe

On Tuesday Oliver went to theatre for a dressing change and also to have a new hemo-cath line as his was playing up but struggled with his breathing when he got back to the ward so was quickly assessed by PICU and taken back to PICU and put on a ventilator so we decided to make sure we were all together so Paul and Ella came over after school and Ella had 2 days at “hospital school”.

At the same time we were told by Dr Hartley that as Oliver’s GVHD was flaring up again we only had one more option for treatment and that was campath.
We had been told about campath before and were very reluctant to let Oliver have it as it has a lot of nasty side effects but our main concern was that it would wipe Oliver’s immune system completely leaving him without any defence against infection. When campath had been mentioned before we had other options with steroids and mesenchymal stem cells but as these had not had any real effect we decided campath was our last option to try and so on Wednesday Oliver had his first dose of campath. Thankfully he did not develop any side effects and we expect him to have a further dose or two next week and hopefully this will stop the GVHD attacking his body until he can resume ECP.

Back on PICU again

Oliver went back to theatre again on Friday to have his dressings changed and was also seen by the opthalmologist who was concerned that his left eye was deteriorating because of GVHD so he is now having ointment in both eyes every hour to try and help. Oliver’s skin is now very sore and raw in several places so he’s sedated to keep him comfortable and also to keep him from trying to pull his ventilator tube! We had hoped to get Oliver extubated this weekend but he’s needed more breathing support and we’re hoping he doesn’t have a chest infection.

Well, I’ve been here almost a month now and I have no idea when I might be able to go home.

My GVHD seems to be under control thanks to three lots of mesenchymal stem cells but my skin is healing very slowly so I’m still needing pain relief and oxygen. I’m on a lot less than I was though and hopefully in the next week I can manage without.

Managing a rare smile

As I have been so poorly I couldn’t get to Rotherham for ECP and Birmingham don’t do it. Yesterday though me, Daddy and Monica the nurse went for a day trip to Rotherham via ambulance and providing I stay well I’ll be able to go twice next week. It would be a lot easier if Birmingham Children’s did ECP and Mummy emailed the CEO of the hospital this week and the big bosses are now talking about it, so hopefully it’ll be soon! ECP is the only thing that’s going to cure my GVHD so it’s really important I get it.

On my way to Rotherham

I’ve seen the opthalmologist quite a few times because my eyes are really sore and dry. He thinks the GVHD is being controlled and I have loads of ointments and drops but they’re still too sore to open most of the time, so I just do lots of sleeping as I can’t really play!

I do have some good news though, and that’s that last week I managed to get upto full feeds via my NG tube so I finally got rid of my NJ. Mummy and Daddy were so pleased as they used to worry I’d pull it out at home.

What a sorry state I am!

Ella went back to school on Thursday so Mummy and Daddy are having to take it in turns with one of them with me and the other at home with Ella. It’s rubbish and I want us to all be together!

I’ve spent most of this week sleeping and being a bit spaced out but thought I’d keep you all updated!

So I had my stem cells last Friday and it seems these have done some good as thankfully my rash hasn’t spread. I also smelt of sweetcorn the following day which Mummy and Daddy thought was a pleasant change from me smelling of sick and stoma poo! I had some more stem cells yesterday and even have a certificate to prove it! As they seem to be working I’m going to have more next week.

Having a break from my mask

I started struggling with my breathing over the weekend and ended up needing oxygen to help me. My rash was also very painful and itchy so I’ve been having intravenous pain relief and most of the time it helps but on Sunday it got too much so I went to see my old friends in PICU for a couple of days where my pain and oxygen needs could be managed better. My skin had started to blister really badly and it took Mummy, Daddy and Dr Brown the dermatologist a very long time to clean and dress my skin on Sunday and I got very cross and upset so the following day the burns team took me to theatre and put me to sleep so they could wash and dress my wounds properly. They also had to put a catheter in my winky because the GVHD had spread there. Ouch!

So pleased to see my big sis!

On Wednesday night I started needing more oxygen so I was taken back to PICU and I’m now back on CPAP and all the bongs and beeps of the machines in there. I’m being really well looked after and have never seen so many people come and check on me. There’s been doctors, physios, the pain team, the ophthalmologist, the haemotologist and dermatologist. I say “seen” I’ve mostly been asleep this week as on lots of pain relief to keep me comfortable.

Dr Hartley had a bit of a shock when she got back from holiday and saw me as the last time she saw me I was smiling away at outpatients but hopefully now my GVHD seems under control I can get well enough to start having ECP again. In the meantime I have two nasty infections to fight off and I’m trying my bestest!